Should You Go Gluten-Free? A New Test May Answer the Question Once & For All

gluten sensitivity vs. celiac

Some 3 million Americans are walking around with Celiac Disease and do not even know it! Traditional screens and tests can be tricky, but HLA-DQ2/DQ8 gene testing may change that.

You can now seek genetic testing to see if you’re at 400% more risk for gluten sensitivity and/or Celiac Disease.

Before I get into the specifics of the test, here’s a quick summary of what’s been going on…

Gluten and Celiac Disease

Celiac disease is an autoimmune and inflammatory disease of the small intestine triggered by gluten – a protein found in wheat, rye and barley products (pastries, cereals, pastas, breads, flours, some sauces etc).

When genetically susceptible people eat gluten, they may experience a mild to severe immune reaction – leading to poor absorption of nutrients and gastrointestinal distress.

While it is becoming “standard of care” to screen for celiac disease in individuals with irritable bowel syndrome, iron deficiency anemia or unexplained arthritis (1), many health professionals still do not recognize that gluten sensitivity can occur in the absence of any signs of celiac disease (2; 3).

This is partly because celiac disease is difficult to diagnose and associated with a wide spectrum of patient symptoms and may even be symptomless (4).

The result?

It is estimated that only 10-20% of individuals with celiac disease have been diagnosed (5).

That means that up to three million Americans are walking around with significant intestinal damage that warrants a celiac disease diagnosis and do not even know it.

Making matters worse, even more  Americans are walking around with a sensitivity to gluten and are unaware.

Thousands of them could be eating a slice of gluten-rich pizza right this very moment.

Did I mention that it can be completely symptomless, while beneath the surface a firestorm could be brewing?

Ask anyone with celiac disease, firestorms and the gut do not mix well.

The Difference Between Gluten Sensitivity and Celiac Disease

The only difference between celiac disease and gluten sensitivity is damage to the intestine.

That’s it.

Gluten sensitivities happen on a spectrum, with damage to the intestinal mucosa occurring in more progressed cases.

Guess what…

Your intestines perceive no pain until damage has progressed into deeper tissues.

Why wait until you have damage to your intestines before deciding: “Eh, I guess it’s time to go gluten-free”?

But that’s exactly what most doctors do – they wait until you have damage to your intestinal lining to tell you that gluten could be a culprit.

It can be incredibly frustrating to undergo rounds of gastrointestinal testing and still not have any real answers or action steps given to you.

So although you may not have Celiac disease, you may still be sensitive to gluten and ultimately benefit from a gluten-free diet.

Yet, most doctors do not recognize alternative means of testing and still wait for a  intestinal biopsy before recommending a gluten-free diet.

But at that point of diagnosis, the disease can be extremely difficult to manage.

And, in rare cases the inflammation continues even after removing gluten completely from your diet.

So how do you know?

Genetic Testing for Risk of Gluten Sensitivity and Celiac Disease

You can now seek genetic testing to find out if you’re at risk for gluten sensitivity and/or celiac disease.

There is a strong genetic association between celiac disease and the genes: HLA-DQ2 and HLA-DQ8.

  • 90% of celiac disease patients carry the HLA-DQ2 gene, while the remaining 10% express the HLA-DQ8 gene (6).
  • Carriers of the HLA-DQ2/8 genes have an approximate 400% increased risk of developing celiac disease (9).
  • Some doctors have theorized that up to 81% of Americans may be carriers of the HLA-DQ2 or -DQ8 genes!
  • Individuals with the most risk are those with first-degree relatives or siblings who have already been diagnosed with celiac disease (as much as 2000% increased relative risk!) (10).

Having the gene markers does not mean that you suddenly have celiac disease or gluten sensitivity as other factors are involved.

It does warrant active screening for a gluten sensitivity.

And, a positive test is almost 100% necessary for celiac disease to exist.

But, NOT having the markers (a negative test) virtually guarantees that you will never have celiac disease (78).

So testing can be very valuable to you if you are wondering whether gluten is a possible culprit for your health problems, or to assess whether its something that may run in your family.

Aside from genetic risk, other lifestyle factors influence who develops celiac disease or not:

  • In what period of development was gluten introduced into the diet?
  • How much gluten was given?
  • Was your mother breastfeeding before/during/after you were introduced to gluten?
  • How long were you exclusively breastfed (if at all)?
  • How much gluten are you currently consuming?(111213).

Even in the presence of HLA-DQ2 and HLA-DQ8 genes, doctors will still wait to confirm a diagnosis with an intestinal biopsy before recommending a gluten-free diet.

What they are looking for is flattened villi – the absorptive folds that increase the surface area of the small intestine and allow for optimal nutrient absorption. Often, their findings can be inconclusive.

A Pandemic in Motion

You might have noticed that the gluten-free sections of grocery stores have doubled and tripled in size.

Consumers are speaking with their wallets.

Despite gluten-free diets being less convenient, more expensive, and (perceived as) less tasty, the gluten-free movement has been moving at incredible pace.

With few clinical exceptions, all that I’m saying is that it doesn’t hurt to try a gluten-free diet.

You can:

1.) Try a 30 day elmination of gluten, see how you feel. Reintroduce it and see what happens. All of my clients receive a detailed, comprehensive 30-day food plan complete with 6 weeks of recipes, shopping lists – so detailed that each item on your grocery list is number-coded to the individual recipes. (At the very least, try 14 days).

2.) Undergo comprehensive saliva, serum, or stool testing (in order of increasing sensitivity & expense) to screen for active antibodies. False negatives (negative test when you are actually positive) can be common, and gluten may not be the only culprit.

Despite the wide variety of testing available, the medical community still resorts back to a small intestine biopsy prior to making any recommendations.

The problem I have with intestinal biopsies is that you need substantial damage to the intestine to be present for the test to come back positive.

In my experience, medical reports often remain “inconclusive”, and clients are still subjected to endoscopies, colonoscopies, and other gastrointestinal imaging tests searching for a definitive diagnosis..

Why does it matter?

Because patients like you are still left scratching their heads on where to turn next when they may benefit considerably from a trial of a gluten-free diet.

Personally, I’d rather try something and see if I notice a benefit, rather than waiting on answers that may never be found.

But that choice has to be between you and your health professional.

Why is Traditional Celiac Testing Undependable?

10% of celiac patients do not show antibodies to wheat.

Test results can be complicated if clients are:

1.) Young

2.) Taking immune-suppressing medication (such as Prednisone)

3.) Already undergoing a gluten-free diet
(14)

What About Malabsorption?

Most of the complications of celiac disease are due to malabsorption of nutrients (15).

Malabsorption can be present before damage to the intestine occurs & even before a gluten-sensitivity is evident, and is not something you  “feel” going on.

It is important to realize that malabsorption reflects a functional impairment, not necessarily a physical malady.

So while traditional testing methods have their strengths and weaknesses (and sometimes overlook the issue of malabsorption), it is clear that:

As long as medicine sticks to traditional means of screening for celiac disease, it will remain under-diagnosed (16).

Why wait for hundreds and thousands of dollars of testing when the treatment could still come back to one thing – a gluten-free diet.

  • Serum and saliva testing can be undependable.
  • Stool testing can be expensive & less convenient.
  • A biopsy can be inconclusive or confirm problems too late in the process.

This is why genetic testing for “HLA DQ2” and “HLA DQ8” could be one of the most useful & cost-effective tests.

HLA DQ2/DQ8 Testing

HLA DQ2/DQ8 testing can help rule out celiac disease or reinforce an existing diagnosis when other techniques still leave questions (1617).

The lab I use charges $179 for testing, but the fee can be as low as $100 when added to other tests.

(I earn nothing from the testing fee)

Consider testing if you want to confirm a suspected gluten sensitivity or rule it out completely.

  • A positive test affirms risk – you would still need to try an elimination diet and/or have a biopsy performed to confirm a diagnosis.
  • Medical professionals will still rely on a biopsy to affirm a celiac disease diagnosis, but the treatment is still the same: a gluten-free diet.
  • Again, the only difference between a gluten sensitivity (unrecognized by many health professionals) and celiac disease is that celiac disease is associated with measurable damage to the small intestine.

Update:

Since the writing of this post, the July 24th, 2012 issue of the American Journal of Gastroenterology published a paper entitled “Non-Celiac Wheat Sensitivity Diagnosed by Double-Blind Placebo-Controlled Challenge: Exploring a New Clinical Entity”. The authors concluded:

Our data confirm the existence of non-celiac WS

[wheat sensitivity] as a distinct clinical condition. (18)

Other Resources:

50 Shades of Gluten (Intolerance)

Natural Wellness for Autoimmune Thyroid Disorders

12 Comments

  1. Harold Gardner July 16, 2012 at 7:01 am - Reply

    Go gluten free changed Novak Djokovic’s life!

  2. Alma Martinez July 17, 2012 at 5:54 pm - Reply

    Great job explaining and answering with detail a lot questions a lot of people have regarding a gluten free diet. Will definitely share it with friends who are always asking me . It has been a year going gluten free following my doctor’r recommendation not an easy journey sometimes but worth it at the end.

    • Alexander Rinehart, MS, DC, CCN July 17, 2012 at 6:30 pm - Reply

      Thanks Alma for your comment and greatly appreciate your shares. A “journey’ is a great way to describe living a gluten-free lifestyle. It’s not easy, but it’s ultimately rewarding for those who are sensitive.

  3. Jan Stafl MD July 21, 2012 at 6:44 am - Reply

    While it may be true that 3 million Americans have undx gluten sensitivity, I suspect even more have gotten on the gluten free bandwagon without real cause. We have seen various food fads in the past, and I bet more will come. Eating fresh unprocessed foods, not too much, is the best food advice for most individuals. Ancestral history matters, and I venture to say that those with a central European backround benefit from gluten containing breads, and especially beer. Now there is a food habit that has remained popular since the first agricultural civilizations!

    • Alexander Rinehart, MS, DC, CCN September 19, 2012 at 8:55 pm - Reply

      Dr. Stafl, this has been the notion for years, but there is growing support for non-Celiac Gluten Sensitivity. Check out this abstract from a double-blind, placebo-controlled trial from the American Journal of Gastroenterology published July 24th 2012, just a week after the posting of this article: http://www.ncbi.nlm.nih.gov/pubmed/22825366.

  4. What is Functional Medicine? December 31, 2013 at 9:54 am - Reply

    […] Should You Go Gluten Free? […]

  5. Judith Fine-Sarchielli April 8, 2014 at 9:58 pm - Reply

    You mention in a previous email a list of doctors that deal with gluten issues would be found at the end of this article with this website
    http://dralexrinehart.com/stress-benefits/what-is-functional-medicine/

    I do not see it here.

    Thanks for your very valuable work!

    Judith

    • Hi Judith,

      At the bottom of that article is a list of various directories to find a functional medicine minded practitioner. Some are listed online, some require an inquiry to an organization.

      It would be very difficult to have a functional medicine practice without being aware of gluten sensitivities and the myriad of problems they may cause directly and indirectly.

      Additional health professionals may be found at http://www.primaldocs.com as a “primal” lifestyle is highly likely to be gluten-free.

      It can still take some research to find a good physician-patient fit, but these resources really help to narrow your research and save you a lot of time and wasted appointments.

  6. Paula February 12, 2015 at 1:20 pm - Reply

    I’d love to get your input on my situation – I gave up gluten completely 7 years ago, immediately felt better, and have been strict about not having gluten since that time. I was not tested 7 years ago. If I have even the slightest bit of gluten, I have severe symptoms now.

    What would you recommend for testing at this point? It’s my understanding that you need to be on a gluten diet to get a correct diagnosis from the blood test or the biopsy. I’m unwilling to subject myself to the misery of living with gluten to be officially diagnosed, but would very much like to know if I have celiac or just a significant intolerance.

    I bring this up because while many practioners recommend trying a gluten free diet, I think the first line of action should be to get blood work and possibly the biopsy done BEFORE giving up gluten. Otherwise, you have to go back on a gluten containing diet to get a positive test result.

    Thank you for your help!

    • Paula, generally speaking, you are correct, with having given up gluten long ago. You are unlikely to find antibodies, as the half-life for IgG is 2-3 months, and I believe stool antibodies are only sensitive up to 9-12 months, but the gold standard for elimination diet is that you remove the food, symptoms disappear, reintroduce the food and symptoms reappear. Why would you need further confirmation?

      What may be useful is looking at what other grains beyond wheat, rye, and barley that you may be reactive to, that you may still be eating as substitutes for the gluten-containing grains. This could be done through Cyrex Array 4. These are investigative tests, and so the information is nice to know, but you still want to make sure the information is actually useful for you. I can’t make that determination for you outside of a clinical setting, but I hope this helps lead you in the right direction.

      If you decided to eat gluten and test, I would look to Cyrex Labs’ Array 3 to look at the full range of antibodies to gluten and other proteins in wheat – this is the most sensitive test that I know of. Both Arrays 3 and 4 need to be ordered through a practitioner and I believe cannot be ordered in NY State due to some rules there.

      You could do an HLA DQ2/DQ8 screen. If you are negative, it is not likely a gluten problem – if positive, I would feel more comfortable that you are correct with gluten being an issue. A negative result does not mean free reign for wheat though, there are other compounds in wheat that can be reactive other than just gluten (Cyrex Labs Array 4 looks at the full range of these antibodies). Hope this helps!

  7. […] have a genetic predisposition to autoimmune disorders, allergies, or sensitivities such as gluten (HLA DQ2/DQ8 genes), it can be difficult or nearly impossible to turn it “off”. After it has been activated, […]

Leave A Comment